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Re: Hello

Posted: Sun Feb 12, 2023 8:07 am
by Zyklon
I did not remember. It was 2-3 times more than the recommended.

Today I somewhat feel better.

Re: Hello

Posted: Sun Feb 12, 2023 1:10 pm
by jimmylegs
glad to hear that you're feeling somewhat better!

re melatonin, I have understood ~3mg to be the recommended dose for conventional use as a sleep aid,
9mg to be what worked on epileptic seizures for children above 30kg,
and as much as 18mg to have been effective for RBD in adults - so as much as 6x conventional dose.

https://www.frontiersin.org/articles/10 ... 94872/full
"Treatment can be initiated for RBD ... Oral treatment options include melatonin (3–18 mg) nightly (144) or low doses of clonazepam (0.25–1.0 mg) (145). While clonazepam is considered first line treatment for RBD, melatonin is often effective and better tolerated (144)."

https://www.ninds.nih.gov/health-inform ... /myoclonus
"Clonazepam, a type of tranquilizer, is the most commonly used medication to treat some forms of myoclonus."

and just for fun, some reported post treatment clonazepam withdrawal symptoms include severe hypnic jerks.
could be a good reason to give melatonin another try at a higher dose..!

Re: Hello

Posted: Mon Feb 13, 2023 9:08 am
by Zyklon
No hynip jerks yesterday.

Tomorrow I will meet a new friend, Aubagio. I will share my experience.

Re: Hello

Posted: Mon Feb 13, 2023 9:19 am
by jimmylegs
good news! hope you and your new friend get along well :)

Re: Hello

Posted: Mon Feb 13, 2023 10:39 am
by NHE
Hi Zyklon,
Zyklon wrote: Mon Feb 13, 2023 9:08 am No hynip jerks yesterday.

Tomorrow I will meet a new friend, Aubagio. I will share my experience.
You may be interested in reading the Aubagio prescribing information.

http://products.sanofi.us/aubagio/aubagio.pdf

It lists increased neuropathy as a side effect. That might mean if your neuropathy gets worse, that it could be the Aubagio and not your MS. There is also a black box warning for liver toxicity. That's something you'll want your docs to watch out for.

Re: Hello

Posted: Mon Feb 13, 2023 11:34 am
by Zyklon
Hi NHE,

Thank you for reminding me. I have experienced increased liver enzymes with Rebif which recovered in 2-3 months. I can live with some neuropathy as long as I am in good protection. Lots of headaches with Rebif but very much worth it.

The only side effects that worry me are PML and cancer. Aubagio seems very safe about those.

Re: Hello

Posted: Tue Feb 14, 2023 1:50 pm
by NHE
Hi Zyklon,
Here’s a link to a video by Gavin Giovannoni. He discusses teriflunomide as well as other drugs in the context of inhibiting EBV.

viewtopic.php?p=262656&#p262656

Re: Hello

Posted: Tue Feb 14, 2023 11:55 pm
by Zyklon
Hi NHE,

I watched it. Really good video.

BTW I am waiting for some tests. Got the Aubagio. When docs give me the green light, I will share the experience.

Re: Hello

Posted: Sat Feb 18, 2023 4:07 am
by Zyklon
Green light and I have started Aubagio.

Got the first tablet. Looks cute :D Too early to talk about anything.

Re: Hello

Posted: Fri Feb 24, 2023 10:52 am
by Zyklon
Well after 1 week of Aubagio, I only experienced very minor flushing.

I am still somewhat recovering. I guess this was a very minor relapse.

Re: Hello

Posted: Wed Mar 01, 2023 3:04 am
by Zyklon
Well, I am recovered without steroids. Aubagio is going well for now. If a slow escalation of DMT works for me, it will be awesome. I want to save the big guns for later when I will need them most. Also, I want to see more long-term follow-up studies for Ocrevus and Mavenclad. HSTC is another potential area. Big pharma and docs learn more and more every day.

Nowadays, I kinda understand why docs have different approaches and let patients decide on the DMT. My first relapse was a nightmare. Tysabri, and Ocrevus might be offered by some docs. Rebif surprisingly worked for me after such a relapse. That was because of luck or something I did. MS is very very complex with lots of variables. Nothing is absolutely right or wrong. I don't know of any other disease like MS. It's so terrifyingly unique...

Re: Hello

Posted: Tue Mar 21, 2023 10:06 am
by Zyklon
T0 and T0+30 Aubagio tests. These are only for information:

White Blood Cell Count 6,94 to 4,3 x10^3/µL (This is really interesting.)
Hemoglobin 15,0 to 15,5 gr/dL (Not alarming but no explanation.)
ALT 33 to 43 IU/L (This is well expected. Nothing major but needs frequent monitoring.)
CRP 2.1 mg/L

The last 30 days were a rollercoaster for me. Ups and downs. Fatigue (Liver ALT increase maybe?), vision issues, dizziness, ataxia, and diarrhea. Nothing lasts more than 2 days, mostly some hours.

I plan to get an MRI to see if I have active lesions and have a baseline for Aubagio. I have a feeling that it is not working which I will prove with another MRI 3 months later.

Diet-wise I try to follow an anti-inflammatory diet without any junk and bad oils. Salmon, blueberries, walnuts, almonds, vegetables. I already lost 3 kilograms and looking much better.

Exercise depends on my mood and fatigue. I push myself to go pilates and walk. Maybe I switch back to GYM.

I need to go to a psychiatrist. It is mentally tough nowadays. I need less anxiety, better sleep, and mindfulness.

Take care all ;)

Re: Hello

Posted: Thu May 04, 2023 1:09 am
by Zyklon
Well well well. I am very much surprised. From my last message:
The last 30 days were a rollercoaster for me. Ups and downs. Fatigue (Liver ALT increase maybe?), vision issues, dizziness, ataxia, and diarrhea. Nothing lasts more than 2 days, mostly some hours.

I plan to get an MRI to see if I have active lesions and have a baseline for Aubagio. I have a feeling that it is not working which I will prove with another MRI 3 months later.
Got the MRI 2 days ago. No new lesions and no change. I restarted Celexa, my good anti-depressant friend :-D I lost 7 kilograms of body weight in the last 2 months. Aubagio goes great.

Take care, mental health is important.

Re: Hello

Posted: Sat Oct 21, 2023 3:35 am
by Zyklon
I have a new silent C6 spine lesion one millimeter in diameter. Since it is a spinal lesion, I will not risk anything and change my DMT to a stronger one. Mavenclad or Ocrevus if my doctors give the green light. Another NEDA journey will start soon :)

Don't forget your MRI and other checks. As you see in my case, they are critical.

Re: Hello

Posted: Thu Nov 16, 2023 8:55 am
by Zyklon
I got my first Ocrevus infusion today. It was reaction-free. I feel a little bit dizzy after 5 hours. The second half-dose is 15 days later. I want my NEDA back. Let's play the game again ;)